POS0786-PARE CONNECTING THROUGH SHARING - PUBLISHING A BOOK FOR YOUNG PEOPLE WITH RHEUMATIC AND MUSCULOSKELETAL DISEASES (RMDS) BY YOUNG PEOPLE WITH RMDS
Authors: C. Kievit, R. Meuldijk, S. Van Dijk
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Research has shown that adolescents with chronic conditions such as rheumatic and musculoskeletal diseases (RMD) are more prone to developing psychiatric conditions. Reasons for this could be the common stigmatization that they encounter in their daily life and the feeling of being the only odd one out. Youth-R-Well.com, the Dutch organization for youth (18-30 years) with RMDs, responded to this by providing monthly columns from their peers with RMDs. These columns show the daily life and struggles of young arthritis patients with a touch of humor, thus providing some of the much needed recognition. <h3>Objectives</h3> The main objective of this project is to provide information, recognition and awareness about the daily life and struggles of young RMD patients. By reading the columns that were written lightly humorous, it will be easier for young people to find the much needed recognition that they often lack in their own environment. These columns do not only recognize the often experienced pain and (chronic) fatigue, but also recognize the insecurities that come with living with a RMD, and show ways to face them. By describing their daily life, these young people provide tips on how to approach certain situations. Therefore, besides providing information and recognition, these columns can also function as a tool that increases the self-management of their disease. <h3>Methods</h3> To provide these columns, different young people with a RMD (18-30 years) were asked over the years to regularly write columns that were published on the website of Youth-R-Well.com. To draw more attention to the columns and reach more people, e.g., by distributing the books in hospitals, the columns of one of the writers will be published in a book. <h3>Results</h3> Since 2012, approximately 150 columns have been published on the website of Youth-R-Well.com, from nine different writers. Youth-R-Well.com has received, and still receives, many thankful messages from young people with RMDs, saying that they benefited a lot from the tips and recognition that the columns provided. The book has not been published yet, but Youth-R-Well.com is right now talking to self-publishing companies, and has also received commitments from parties that will take partial responsibility for the costs of publishing. <h3>Conclusion</h3> Publishing columns on a regular basis has helped a lot of young RMD patients in the Netherlands to feel recognized in their struggles with living with a RMD. They have said to have learned a lot about how to cope with certain issues that come with having a RMD. This is something Youth-R-Well.com will definitely continue with. The book is unfortunately not published yet, but will be in the near future. <h3>References</h3> [1]Millen, N. and C. Walker (2001). "Overcoming the stigma of chronic illness: strategies for normalisation of a 'spoiled identity'." Health Sociology Review 10(2): 89-97. [2]Suris, J. C., et al. (2004). "The adolescent with a chronic condition. Part I: developmental issues." Archives of Disease in Childhood 89(10): 938-942. <h3>Acknowledgements</h3> We want to thank Josien, Marijn, Linda, Philine, Heleen, Veerle, Ilse, Noortje and Rebecca for writing all the columns. <h3>Disclosure of Interests</h3> None Declared.